Ibrance (Palbociclib)
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Memorial Sloan-Kettering does not offer the high-dose flu shot to patients under 65. Something about the naturally-occurring weakened immune system of the elderly being different from a pharmacologically weakened immune system, such as that of a patient receiving chemo- or targeted therapy. So I get my regular flu shot as soon as it's available (got it just this week at CVS). No need to have it administered at Sloan-Kettering.
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Hello to All,
It has been 24 days since I had my radio-frequency ablation w/ a vertebroplasty to my T11 vertebrae. My vertebrae was broken downward, from front to back. So now that nasty tumor is fried to pieces. However the main reason for the surgery was because my tumor had gone from stable to active, but prior to this surgery I'd had a bone scan & PET scan. Both showed no lesions anywhere else so far. So I am wondering if I am now considered NED. I see my MO on Friday to discuss my future treatment protocol from here. I think I'll continue at least the Faslodex & Xgeva, but am wondering if I'll be able to take a break from the Ibrance for 6 mos. I've already been off of it since the last week of July, just prior to being admitted to the hospital with Cellulitis & Sepsis on July 30th. I have so many questions to ask my MO I am going to have to write them all on a note pad so I can remember them all.
Although my MO offers me the flu shot yearly, I have not had one for at least 5 years. I have not gotten the flu so far, just cellulitis & sepsis. When I was hospitalized the end of July my immune system tanked and my MO ordered 1 shot of Granix. It worked very well and increased my Neutophils from .82 to 5.46 over night. But I was in soooo much pain that the pain meds did not help. Even 2 shots of Fentanyl. It took hot packs and Oxychodone 10-12 hours to finally get some relief. I am concerned about the things they add to the vaccines today and prefer to avoid them as much as possible.
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Libby....I've had no issues with insurance etc. regarding my 2nd round of Ibrance. I'm just praying it works this time around.
Candy...I haven't had a flu shot in 3 years. I'm pretty much a homebody and I'm seldom around a lot of people, other than holidays.
Hope
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So I don't check the board for three days and look at all these posts! I need to catch up ...
In case you still there:
SkyFly: I'm of course not her MO and don't know all the details, but from everything I've read so far, your Mom may have a particularly good prognosis. Once the shock wears off and she gets into the routine of treatment I predict you'll both start feeling a lot better!
GoinCrzy: As many have said, the TMs seldom tell the real story. Sounds like the last CT scan gave you a reason for some optimism?
PatG: You are pretty fine yourself, my friend. :-)
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Not sure how this all works yet, but thanks ladies.. I’ll buckle up and see where it takes me... xx
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Met with MO today and wanted to share some information, just in case it helps someone else. I've been having lung issues, barking cough, and loss of voice for a few months, despite stable scans. MO is pursuing carefully (love that woman!) and offered several options. One was to suspend Ibrance for a month to give my body a break. I countered with a two-week break and then back at 75mg. I'm also getting a referral to head and neck, and testing for my thyroid. So it could be SE's or something other, but in any case I am moving forward.
She said yes to flu shot, no to high-dose. I am 60. Lastly, I asked about a couple of bone mets that are "blinking", show up on a scan, disappear, show up again. She said this is typical, not considered progression. She said, practically speaking, it's not considered progression unless a new spot appears. But because they're on again, I'm staying on monthly Zometa infusions.
JunieB, sounds like good news overall. Get a pad and write down all your questions, it helps focus your thoughts.
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Jaylea...yes I'm going really well since I took this giant step for womankind. I feel certain it's going to make a huge difference to my health not to be living with someone who I love but who loves stress and drama. The peace and quiet are soothing.
Patg ..... I've done a right hand turn and have a completely different attitude. I'm certain you're onto something about MBC not always being incurable and I intend to be one of those who proves it. Whenever my mind wanders down the path of "where will I be in x number of years, will I be here?" I think of you and know I will be. You're a Godsend.
As usual I've read four pages of posts and can't remember the names of those I want to mention. Was it Skyways who was worried about the 100mgm dose? I started on 125mgm for the first about six or seven months and had Grade 4 Neutropenia so I was dropped to 100mgm and it hasn't made any difference to my scans. They're all still stable.
There were others I wanted to reply to but my mind is a sieve since I started taking Palexia for pain. Last week we had friends here from China who last saw me in March and they couldn't stop exclaiming about how well I look now compared with then.
Someone mentioned side effects. I've found that since I've been less stressed I hardly have any. Either that or I've got so used to them I don't notice them much. I have mouth ulcers and cold sores (I think you call them canker sores in the US) and some nausea but I'm used to it so don't really notice them. I'm now on cycle 16.
Life is good and I'm feeling good without the stress! I'm going to start a new post because I had an epiphany this morning and I want to share it if I can find the words.
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We had visitors from China for 3 days and I spent a lot of time mulling over things with them. They have a different philosophy than mine...or at least than the one my mind had allowed me to slip into. There were problems at home, I'd had my pessimistic sister visiting me "to look after" me (I don't need looking after! Honestly!) telling me that she could tell by looking at me that I didn't "have long"....she really did say that to me!!! So, with all that and a few other things, I'd fallen down a dark hole. The friends from China came especially from Beijing to Perth, Australia to see me and we talked and talked and talked! I suddenly saw the light again and it was such a relief to welcome myself back to me (if you can follow that). They believe in miracles, they believe in taking responsibility for ourselves and for keeping our power. All things I used to think but I'd got lost somewhere on the track. Suddenly I decided "why do I have to believe what others are telling me when it doesn't fit with what I'm thinking?" and I'm in accord with you, PatGMc. Who says we HAVE to all die from MBC? And I thought about what's happened in my life since my diagnosis and there are so many good things that have happened that it dawned on me that cancer gave me back my life. It has brought a lot of friends back to me, friends I thought I'd lost forever - just one of those things that happened because for about eight years before I was diagnosed I'd lost a lot of friends because I was too sick to go out and even to phone people so they forgot me (people can be so fickle!). Cancer has taken with one hand and given a lot back with the other hand, strange as it may seem. It's taught me the real meaning of empathy for one thing. It's taught me patience and perseverance and it's 's given me time to sit and contemplate and philosophise like this. If I were well, I'd be running around after everyone and I can't do that now so I've learned to be selfish in the correct way. Because I'm not running around to coffee mornings friends come and sit with me and I have time to really listen to them and they love that.
You'll get my gist. I have to stop. I've made this so long the program can't keep up and it's taken ages to type.
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hi leapfrog another Aussie girl her
Great to hear that your mojo is back.... your Beijing friends sound wonderful
Great to read that love and friendship can resolve the dark spaces
All the best
Bright in hope
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Hi Bright...which part of Australia are you from?
My Chinese friend is learning to read palms. She read mine and showed me the cancer on my lifeline and this was SO encouraging because the lifeline chugs along through the cancer and continues. It's faint but it's there.
Some of my inspiration has also come from Instagram, where I follow a young woman who was diagnosed with ovarian cancer in her 20s. She was told she would have to have her entire pelvic organs removed, including her vagina, and have them fashioned from skin grafts. She decided she wasn't having that and used every means she could not to do it. She had a massive operation, but not that one then chemo after chemo after chemo. She was told she would never have children but she did. She has two beautiful children and now she runs a life coach/physiotherapy/exercisology clinic and shows videos showing yoga exercises in which she is now full of life. Her Instagram profile name is Cancer_saved_my_life I might have that name a bit wrong but it inspired me to think why she would say that cancer saved her life so I read all her posts and absorbed her thoughts. That, combined with my friends' belief in the power of the mind over the body changed me.
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Hi Ladies
Today I will get my first injection of Fulvestrant and tomorrow I will start with Ibrance. I'm a bit nervous about the side effects I read about. Also a bit sad that my Letrozole round only worked for a year.
I read a lot in this thread and it's giving me hope. I did a trekking in Switzerland this weekend that strengthened my faith in myself. I have a strong physic and a enormous psych :-)0 -
Josalo, welcome to Breastcancer.org! We're glad to read that you've been finding hope and strength from all these wonderful members here. If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here!
Best wishes,
From the Mods
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Josalo, welcome! We're glad to have you among us. Try not to be afraid of the Ibrance (and Faslodex)....we've all been there with starting Ibrance, and for most of us, the SE have been reasonable and manageable. That first orange capsule scared me to death. I have almost no SE, except some fatigue. I'll take it. You may want to go on the Faslodex string, too, so that you can be prepared for that process. There are some really good suggestions for actually having the shot administered with least discomfort. You'll want to be sure to get the loading dose, too (my onc neglected to mention it, and I found out about it here).
"Break a leg", Josalo....you'll do fine!
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Thanks for you response JoynerL
I look in to the other tread. I've just got my first injection and it felt like I had a bit of nausea and some hot flushs. I'm not sure or if I'm imaging because I don't think I would get immediate reaction.
I forgot to ask if I'm aloud to drink some one but lucky me I have a close friend who is oncology.
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Hi friends,
So, I know that Ibrance needs to be prescribed along with an AI or Faslodex. I'm curious with the AI, if it's necessary to physically take the pills at the same time or if it doesn't matter (e.g., taking Ibrance in the morning, the letrozole at night). Anyone know the science on this?
Welcome to our new friends. Glad you've found us. To everyone struggling, hang on we're with with you. To everyone getting good news, celebrate we're with you. I'm scanning again at the end of Sept and beginning of Oct. My results from 3 months ago noticed a lymphnode was getting bigger and brighter. I sure am hoping that it has tamed back done. Otherwise, I'm expecting to move on from Ibrance and likely to start Faslodex + Kisquali.
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Thanks for you response JoynerL
I look in to the other tread. I've just got my first injection and it felt like I had a bit of nausea and some hot flushs. I'm not sure or if I'm imaging because I don't think I would get immediate reaction.
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jensgotthis, I don't believe you have to take the Ibrance and the AI at the same time. I think it is important to take the meds at about the same time each day, for example the AI always close to 8 am and the Ibrance always at bedtime or whenever. I take mine together right after breakfast because I'd never remember otherwise.
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jensgotthis, I don't believe you have to take the Ibrance and the AI at the same time. I think it is important to take the meds at about the same time each day, for example the AI always close to 8 am and the Ibrance always at bedtime or whenever. I take mine together right after breakfast because I'd never remember otherwise.
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Leapfrog, I love that you are filling your life with the people and information your heart needs! I heard Dr. Lawrence LeShan say, "Your body believes every word that you say," and I also believe we must protect it from the words others say. I have one negative sister who, incidentally, is a physician and another who is a full-of-hope, laughter-inducing friend and baker of fine cookies. Guess who I like having around when I'm sick?!
I highly recommend LeShan's book, "Cancer As a Turning Point" as it has helped transform the "I'll-never-be-well-again" thoughts of me and many of my friends.
About taking the AI and hormone drugs at the same time, I choose to do that at dinnertime, picturing them holding hands as they dive down to do their work. I swallow the Turmeric at the same time so she can remind them not to mess with my joints!
One of you mentioned the orange color of Ibrance and it made me laugh as I think about all the Pumpkin Spice things (which I hate) that flood the marketplace about now. Yes....Pumpkin Spice Ibrance! Everybody wants some!
Love from PatG
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Leapfrog--I found your posts very encouraging and meaningful. thanks.
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Hi All,
PatG thanks for the positivity and the book recommendation, I just put it in my amazon cart. It sounds like my kind of book. I agree SO much about staying away from the negative Nancy's in your life.
Proud of you Leapfrog.
Those of you just starting Ibrance don't be frightened, it's definitely a blessing with few side effects, at least for me. I've been on it for a year and know that it has slowed the growth of my breast cancer mets. I just had a PET scan on Thursday that shows growth in mets to lung and new spot in liver and so onc wants to attack with Abraxane. There are other stories here where the Ibrance is effective for much longer. I love this group and will continue to follow to see what everyone is up to.
This group has been a blessing in my life even though I stay pretty quiet, know that you make a difference!!
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Good luck, French Horn...and do stay with us!!
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I second Pat's recommendation of Cancer as a Turning Point. Great book with useful exercises.
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Frenchorn I had a scare this month, a new "met" showed up on my PET. Then I had an MRI to see it in more detail. Guess what? It wasn't there!! PET can show up so many new things that are not cancer. You might want to ask your MO about getting an MRI before you change TX. Because of the MRI, I am staying on Ibrance.
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Thanks so much for the info Grannax2.... hmmm
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Hi friends-
Catching up on posts from last couple of days. Thanks for all the conversation about the flu vaccine issue. I plan on getting the "regular dose" vaccine in a couple of weeks---I am not 65 years old for the "high dose".
Welcome to new friends. Good to hear from you Frenchhorn. Always good to hear PatgMc stories.
Update on me-
I saw a palliative care doc today for the first time. He is new to our little area ( came the first of the year, I think ). I wanted to hear what pearls of wisdom he had for this metster. First impression, nice guy, my appt lasted 45 minutes to an hour. He asked several questions and took notes. BUT..... it was Palliative Care 101 in my opinion. Nothing new. 1. Constipation issue- drink plenty of water, exercise, high fiber diet. 2. Think about a Power of Attorney for Healthcare--I don't have one, but because I don't really have anyone in my life that I want to appoint. 3. Pain---Tylenol 500mg three times a day, Tramadol 25mg as needed for SEVERE pain. Stay away from ibuprofen. Accupuncture- not covered by insurance, no one in our area ( have to go 200 miles ). CBD oil- not FDA regulated. Tumeric- "not a cure" he said, but MAY work on pain control. He said he did not have any patients with breast cancer, he said he had several with lung cancer ( prevalent in our area, I guess ).
I have posted before that I live in a rural area. I don't think there are any other MBC patients in our area. I can count 5 people that I know personally that have had Breast Cancer, had mastectomy and chemo treatments, but are now done with their treatments. I get the Lupron injection at my MO office monthly to suppress the ovaries since I have not gone through menopause. The last time I went in the office, the nurse giving me the injection commented that I am the only patient that gets these injections. So that just shows there are no others my age (pre-menopausal) with MBC and this kind of treatment since I see many posted here with the same treatments as me. I envy the others here that post about receiving their treatments at well known, well respected, large facilities that care for MBC patients all the time and can get the latest and most up-to-date treatments available. And offer a wide variety of services to compliment the meds.
I have posted before, HELP are there any others out there that are in rural communities and getting what little care is available to them??
BTW, I have another appointment with the palliative care doc in a month to see if the scheduled Tylenol use has helped, if the constipation is better, and to further discuss the Power of Attorney issue. I guess I will go.
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Thanks Ladies very inspiring reading the past few days.
Just as an encouragement, I'm 61 and I do have some SE's. None are as bad as the chemo/rad treatment I had in 2003.
I started swimming again in July after khyphoplasty surgery. It really does make a difference to be active. I have to continue with some activity after the weather changes but it definitely improves my mood.
Leapfrog I always cheer for you!
Thanks for sharing everyone!
Tanya
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Hi again everyone, just stopping by to give some more good news and encouragement. As some of you may remember, I stopped taking Ibrance after 16 months at 125mg and stopped to give my self a break from the fatigue for an upcoming trip. I fully expected to go back on Ibrance on our return but my MO said to just keep using only the letrozole for now. It's been a year and my last CT scan on Monday shows the tumor in my lung is still shrinking with just the letrozole use. My MO thinks I have a very slow growing cancer since it took 25 years to return and it seems as if he's right. I pray the letrozole keeps things stable for a long time. And I pray that all of you have similar successes.
Faith (in the future).
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Hi all! I am currently sitting at the hospital after having a CT scan. I developed some left sided chest pain all of a sudden on Monday evening and went into the ER, had it checked out and they said it was probably just a side effect....however it has not went away and is very uncomfortable. The Specialty Pharmacy called today to see how I was doing on the meds so I ended up telling them about the chest pain, they contacted my MO and their office then called and said they wanted me to have a CT scan to check for a possible PE which I'm really hoping isn't the case. Im sad and frustrated
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hi crazeejane- I’m so sorry you’re going through this scary time
I am sending you a giant virtual hug through my iPhone screen.I know what you are going through is incredibly stressful. All I can say is that when I first started on this journey and medication last year, I had many scares along the way and thankfully my MO team helped guide me through them until a solid plan of action was made. Somehow having that plan and information (albeit very little at times) helped me get through it all.
This awful waiting period will be over soon and you will have a plan of action. Hang in there. Keep checking in and ask questions or just vent here if you need to. There have been days when I have called my MO crying so many times until things made sense. Do not be afraid to lean on them for support and get answers - that’s what they are here for us to do.
In the meantime, do you have any one there with you right now (friend or family) and if not, can you call someone to come be with you?
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